Assessing health-state utility: is there a uniquely privileged perspective?

摘要

There’s been a protracted debate over whose judgments to rely on in assessing the impact of health conditions on quality of life (QOL). The two leading candidates have been the general public and people living with the condition. Despite a general preference for first-hand testimony, people with diseases or disabilities are often regarded as less-than-credible witnesses because they are believed to ‘adapt’ to their conditions in ways that obscure those harmful features. The debate over their credibility has come to focus on the various ways in which people adapt, and which of those ways cast doubt on their accuracy. Becoming insensitive to pain and discomfort, lowering one’s expectations, and changing one’s comparison class are all regarded as accuracy-reducing adaptations; acquiring new skills, interests, and friends are regarded as accuracy-preserving. Although this checklist approach to adaptation has clarified the theoretical debate, it offers little practical guidance, given the heterogeneity of health conditions and the variety of ways in which people with a given condition adapt.